“A Regular Guy: Growing Up With Autism” – A Sister’s Take

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry is an adult with autism. Below is Ali’s response to the book – stay tuned for Kerry’s blog post tomorrow.

Ali and her brother, Jeff

When I was approached to read “A Regular Guy: Growing Up With Autism” and write a blog post from a sibling’s perspective, I was game. Shumaker shares her “family’s story of love and acceptance” in raising her son Matthew. I thought about the last book I read based on this subject. It was a children’s book and I was probably seven. My family always joked that we should write a book about our journey, and pick from the arsenal of stories from over the years. Oh well, I figured; let’s get reading.

I couldn’t put the book down. I got it. I found myself scribbling in the margins, highlighting and starring paragraphs and phrases, while I flipped through the tear-stained pages. My big brother Jeff is 25 years old and has been the focal point of my family’s life. He is inspiring to me and I adore him. Laura Shumaker’s honest portrayal of her life with autism resonates so much with my own.

She breaks up her story into three sections: “Beginnings,” “Navigating Childhood” and the “Road to the Future.” When Shumaker recalls her bout in finding some sort of diagnosis, I see my parents. After jumping from specialist to specialist, all weighing in with different viewpoints and recommendations, a young doctor wearing acid-wash jeans confidently diagnosed autism; as if it was a no-brainer. Having no idea, in 1987, what autism was, and nervous about the unknown life that lay ahead, my parents marched on. They vowed to do everything in their power to give our family the best life possible. As a courtesy to them, I don’t wear acid-wash.

I respect Laura Shumaker for sharing both good and bad experiences of her other two sons. I too, have experienced painful comments and taunts about my brother, even to this day. Just recently, in an upscale Hamptons restaurant I fielded remarks from two grown women in the ladies room. It hurts as much today as it did during recess in middle school. I can share with her two sons the conflicted emotions of having a brother with autism. Always, though my love, respect, and admiration win out for Jeff. I have another “normal” brother, and we have an understanding of one another and I will be forever thankful to have someone to share this with.

Shumaker also tells some embarrassing experiences that you just can’t help but laugh about. Matthew was honest – painfully honest. She tells a story, which was featured on the Autism Speaks Blog, about bringing in a babysitter who also happened to be overweight. Matthew couldn’t drop it, and so that story goes. My brother Jeff is always good for pointing out if you need to dye you hair to cover your roots, as well as unsightly scars, and wrinkles. He has expressed his desire for me to get Botox at the ripe age of 23. How rude.

Daily activities, for a family with autism, can be a great and strenuous adventure. While recalling a trip to church for a Family Worship Sunday, they had a share of surprises; I can’t help but laugh and remember. Our family never dared bringing Jeff to church unless we were prepared with the essentials – a pad and paper or his trusty Magnadoodle. Our lovely church always had a candlelight vigil the night of Christmas Eve. We always strategically planned to sit in a pew near the firefighters in case we had an “issue.” On one particular Christmas Eve, we had run out of paper (rookie mistake) and Jeff began to connect the dots on the polka-dot dress of a woman in front of us. She took it well. ‘Tis the season to be jolly, I guess!

Recently, our family moved Jeffery into a group home. My parents had prepared for awhile, but we just kept procrastinating. It seemed that the move-in date really snuck up on us. The agency Jeff has been with his entire life set up the most beautiful home. They really didn’t miss a trick and we will be eternally grateful. It is literally five minutes from our house, but we felt that it may as well be in Egypt.

Almost 20 years ago, we found three other families in our same boat. We call ourselves “The Lucky Ones,” and it is really true. How lucky we are, to have found an instant support group, that we can weather the storm together. Through the years, we have laughed and cried, and met many angels along the way that made life a little brighter, in times of darkness. I don’t know how we would have made it through without each other. On moving day, the men who have autism, who we will forever refer to as “the boys,” followed each other around like little ducklings. As hard as it was, leaving their home, we knew it was the best thing for everyone. Jeff has been there for about a month and is thriving.

When speaking of her two other sons, she says they, “came together in laughter and in sorrow, and they were left feeling the weight of their family’s bittersweet burden.” My brother Tom and I recently took Jeff out to dinner while my parents were away, and I couldn’t help but get emotional. I was thinking about our future together. How could I ever really move far away? Will we be able to hold everything together, as my parents have all these years? Shumaker put my own emotions so eloquently. The future will always be unsure, but I don’t for a second think Jeff is a burden. He is the purest and greatest blessing in my life. My brother made me who I am.

“A Regular Guy: Growing Up With Autism”sent me in a time machine, one that I would travel through again and again. I would like to thank Laura Shumaker for her honesty and for sharing her family with the world.

I have a daughter age 27 who has a brother, my son Devin age 24. Devin has autism and my daughter Shana has always loved her brother through thick or thin, or should I say through bites and hugs. Thanks you for putting into words the feeling I know she has had for many many years. I only wish I could put into words my life with autsim.

I have two boys ages 6&8. Since my youngest was diagnosed in March Ive worried about how his older “typical” brother would feel about him as they matured. He came to me one night after his baby brother had fallen asleep crying because he didnt understand how he could “love&hate someone at the same time”&”why God would be so mean to his little brother by taking away his words&making him hurt himself instead.” I pray he will see his brother as a blessing as you do yours in time. Thank you for giving me hope.

Danny is 8, Andrew is 3, Alan is 27! Danny once asked, ” Mom, does God love me more than Alan? Cause I can write better than Alan…” I loving replied, ‘ Of course not…God loves all His children…just as I do!” Danny thought for a moment and Said,” You’re right Mom, cause Alan can figure out the DVD/TV remote better than I can.” And so our journey continues………..

Thank you so much for sharing Ali! This book really has become my “bible” and greatest comfort in our journey with autism with our six year old son. It was THE reason I found acceptance in my son’s diagnosis and continues to give me strength. It really did give me the ability to take a deep breath, and relax while giving me the ability to find the joy in our day to day. I to have a tear stained copy and many highlighted sections. I am often worried about my daughter’s journey with her brother. She loves him so, and has a very close relationship with him. I worry how it will be for her in social situations as they grow older, but we will continue to support and love them both in each and every way. I think that sometimes we need to focus on how hard it is for the typical sibling and help them with finding the right balances for them. I love that you have a close family and I can see in the article that your parents found the balance for you all and gave lots of love.
Best of luck to your brother and his new found freedom. Blessings.

Your story kinda makes me thing of myself. I have two brothers one that is normal and one that is autistic . I am 20 years old, my normal brother is 22 years old and my autistic brother is 27 years old. I share gardianship with my mother over my autistic brother. My autistic brothers name is Colin and he is severly autistic. We are very close and Colin has definitly made me the person that i am today. After i graduate from college i plan on working with autistic children.

I have a brother with autism and he is 27. I also know what it’s like and it’s nice to be reminded I am not the only one. I would love to have contact with those who share the same experience. Is there a website for this?

thanks for the insight. I can only imagine what it will be like for Maria, my 8 year old with her brother who is only 6 now. He has HFA, but yet the other kids already tease her about him. I pray she has the strength and commitment to her brother like you do.

Great writing Alison and now you have your story to write, maybe a digital story to start. There is no better family I know than that Dyers and you and Tom and Jeff do your parents proud. Is it time to reschedule?
BK

Ali, thank you so much for sharing this very touching post. Tyler has a sister Avery who is six years younger. We always think about Cameron Diaz in “There’s Something About Mary” when we think about their future. Your post confirmed that there will be many sisters like you and Avery who will be their brothers’ biggest champions and protectors. Thank you for being such a wonderful role model for many. Yours truly, Peter

Although I have not read the book I can certainly relate to the comments made by strangers regarding my HFA 13 year old son. A woman from our school who works with Spec Ed. once looked at my son playing on his nintendo and said my son does not LOOK autistic. Wow. That is when I knew I was in trouble. This is when I wondered if schools are teaching a “one size fits all” program of SPECIAL EDUCATION.

I will definitely have to read that book. Books of that nature let’s me know I am not alone. I have a severely autistic older sister and a moderately autistic son. Growing up I didn’t know a soul who had an autistic sibling, and my friends never understood why I had to help with my older sister especially in my teen years when I was my sister’s babysitter. Now of course they have support groups , and I have met other parents with autistic children I was at a bit of an advantage growing up with my sister. I was able to detect my son’s autism early even though his doctor and speech therapist kept telling me I was wrong and he was just DD. I knew better thanks to my sister I could see the signs and started therapies early despite what they said, and had got the formal diagnosis when he was 3. I know it’s hard to put them in a group home. I still don’t like that my dad put my sister in one, but she has her friends and they have activities so it is good for them in the long run. I don’t know if I will be able to ever put my son in one, but I won’t live forever and I will have to think about who will take care of him when I am gone.